Synnøve Caspari

The lonely battle for dignity: Individuals struggling with multiple sclerosis

Much is known about the phenomenon of dignity, yet there is still a need for implementing this understanding in clinical practice. The main purpose of this study was to find out how persons suffering from multiple sclerosis experience and understand dignity and violation in the context of a rehabilitation ward. A phenomenological-hermeneutic approach was used to extract the meaningful content of narratives from 14 patients with multiple sclerosis. Data were collected by personal research interviews. The findings revealed three main themes: (1) ‘invisibly captured in fatigue’; (2) ‘fighters’ law: one who does not ask will not receive’; and (3) ‘dignity is humanity’. The essence of the findings in this study is that dignity is humanity. According to the participants, dignity requires time and is experienced only in a context of empathy and mutual confidence.

The meaning of dignity in nursing home care as seen by relatives

Background: As part of an ongoing Scandinavian project on the dignity of care for older people, this study is based on ‘clinical caring science’ as a scientific discipline. Clinical caring science examines how ground concepts, axioms and theories are expressed in different clinical contexts. Central notions are caring culture, dignity, at-home-ness, the little extra, non-caring cultures versus caring cultures and ethical context – and climate. Aim and assumptions: This study investigates the individual variations of caring cultures in relation to dignity and how it is expressed in caring acts and ethical contexts. Three assumptions are formulated: (1) the caring culture of nursing homes influences whether dignified care is provided, (2) an ethos that is reflected on and appropriated by the caregiver mirrors itself in ethical caring acts and as artful caring in an ethical context and (3) caring culture is assumed to be a more ontological or universal concept than, for example, an ethical context or ethical person-to-person acts. Research design: The methodological approach is hermeneutic. The data consist of 28 interviews with relatives of older persons from Norway, Denmark and Sweden. Ethical considerations: The principles of voluntariness, confidentiality and anonymity were respected during the whole research process. Findings: Three patterns were revealed: dignity as at-home-ness, dignity as the little extra and non-dignifying ethical context. Discussion: Caring communion, invitation, at-home-ness and ‘the little extra’ are expressions of ethical contexts and caring acts in a caring culture. A non-caring culture may not consider the dignity of its residents and may be represented by routinized care that values organizational efficiency and instrumentalism rather than an individual’s dignity and self-worth. Conclusion: An ethos must be integrated in both the organization and in the individual caregiver in order to be expressed in caring acts and in an ethical context that supports these caring acts.

Aspects of indignity in nursing home residences as experienced by family caregivers

The overall purpose of this cross-country Nordic study was to gain further knowledge about maintaining and promoting dignity in nursing home residents. The purpose of this article is to present results pertaining to the following question: How is nursing home residents’ dignity maintained, promoted or deprived from the perspective of family caregivers? In this article, we focus only on indignity in care. This study took place at six different nursing home residences in Sweden, Denmark and Norway. Data collection methods in this part of this study consisted of individual research interviews. Altogether, the sample consisted of 28 family caregivers of nursing home residents. The empirical material was interpreted using a hermeneutical approach. The overall theme that emerged was as follows: ‘A feeling of being abandoned’. The sub-themes are designated as follows: deprived of the feeling of belonging, deprived of dignity due to acts of omission, deprived of confirmation, deprived of dignity due to physical humiliation, deprived of dignity due to psychological humiliation and deprived of parts of life.

Fostering dignity in the care of nursing home residents through slow caring

Background: Physical impairment and dependency on others may be a threat to dignity. Research questions: The purpose of this study was to explore dignity as a core concept in caring, and how healthcare personnel focus on and foster dignity in nursing home residents. Research design: This study has a hermeneutic design. Participants and research context: In all, 40 healthcare personnel from six nursing homes in Scandinavia participated in focus group interviews in this study. Ethical considerations: This study has been evaluated and approved by the Regional Ethical Committees and the Social Science Data Services in the respective Scandinavian countries. Findings: Two main themes emerged: dignity as distinction (I), and dignity as influence and participation (II). Discussion: A common understanding was that stress and business was a daily challenge. Conclusion: Therefore, and according to the health personnel, maintaining human dignity requires slow caring in nursing homes, as an essential approach.

Tension between freedom and dependence-A challenge for residents who live in nursing homes

AIMS AND OBJECTIVES To present results from interviews of older people living in nursing homes, on how they experience freedom. BACKGROUND We know that freedom is an existential human matter, and research shows that freedom remains important throughout life. Freedom is also important for older people, but further research is needed to determine how these people experience their freedom. The background for this article was a Scandinavian study that occurred in nursing homes; the purpose of the study was to gain knowledge about whether the residents felt that their dignity was maintained and respected. DESIGN The design was hermeneutic, with qualitative research interviews. METHOD Twenty-eight residents living in nursing homes in Denmark, Sweden and Norway were interviewed. Collecting tools used were an interview guide and also a tape recorder. Researchers in the three countries performed the interviews. The data were transcribed and analysed on three levels of hermeneutic interpretation. RESULTS To have their freedom was emphasised as very important according to their experience of having their dignity taken care of. The following main themes emerged: (a) Autonomy or paternalism; (b) Inner and outer freedom; and (c) Dependence as an extra burden. CONCLUSIONS Residents in a nursing home may experience the feeling of having lost their freedom. This conclusion has implications for healthcare professionals and researchers, as it is important for residents in nursing homes to feel that they still have their freedom. RELEVANCE TO CLINICAL PRACTICE In clinical practice, it is important and valuable for the staff to consider how they can help older people feel that they still have their freedom.

The Dialectical Movement Between Deprivation and Preservation of a Person's Life Space: A Question of Nursing Home Residents' Dignity.

The aim of this study was to answer the question “What do nursing home residents do themselves in order to maintain their dignity?” Twenty-eight residents, 8 men and 20 women, aged 62 to 103 years, from 6 different nursing homes in Scandinavia were interviewed. The results showed that the residents tried to expand their life space, both physical and ontological, in order to experience health and dignity.